"The Kayla" - Sunday, April 10, 2011 - "A Sunday Break"

Kayla Quote:  "In a world where you can be anything....be yourself."

Short Synopsis:  Kayla is in limbo...we are waiting for the surgery that is planned for Monday.  Am still worried about that lung but trusting in the doctors, nurses and God.


Long Story:  Be myself....ok, Kayla.  I think I will stay home and go to church and pray for you and bring your last jewelry order to Jessica.  Kayla processed one last order.  She told me that it would come to our home under her name and that I was to bring it to Jessica in church.  

I have studied all of Kayla's lists and things in her bedroom to see what "things left undone" I could do for her.  Kayla was smart - she left only a few strings to tie up....and I was happy to do them.  For the past several months, basically I have been her personal assistant.  Kayla is a human being who needs her own personal assistant and who better to do it than a doting mother.  Mothers become even more doting when their children are chronically sick.


I sat by her side and watched all her favorite TV programs because I was with her...and so did Mike.  We were definitely "Kayla" worshippers.

There was a card left to be mailed to her "little sister" in her sorority.  There was the jewelry to be delivered.  There was the desk to be cleaned up and lastly, there were the boxes left over from the move to be put into the hold under the apartment.


Kayla moved out of her 78 Ridgecrest Drive home up the street when the Barrows sold their family home.  Kayla had lived there with Nicole, Stephanie, Michelle and finally later on, Slim.  She lived there for 18 months but when she came home to live, it was a good thing because she had her big heart collapse on October 20th, a few short months after moving in in July.

I was not kind to having my grown adult child back home but no one could afford rent for her to live anywhere else.  I had converted her old bedroom to a "guest room."  I was very happy when I decorated it with twin beds, nice furniture, nice lamps and paintings.


At first, I told Kayla she could not change anything.  After a few weeks, I realized how unfair I was and told her, "This is your room.  You do what you want with it."  Kayla took down everything I had done and basically re-did it in the same fashion as it was done up the street.  She was very happy.

But this Sunday, I had plans to rest.  After church, where I gave a small report about Kayla during our prayer requests, I went home to move one last barrel of leaves from the island.  A nice raking and this bed will flourish.  Only a few days before I had taken my bare hands and pulled off leaves from small plants trying to get through and suffering - I was on my way to the hospital so had no tool in my hand.

Then another big project....going through the boxes Kayla had left over from her move.  My dear new friend Jeffery Albanesi came by to be with me as I tackled this project.  The world should have more people like Jeff.  He is my singing partner for karoke.  He and I love karoke.  Jeff always lets everyone know what is going on in town and where.  He grew up in Ridgefield, left to reside in New York City for maybe 20 years and then come back, once again, to Ridgefield.

He got to meet Mike and the three of us spent some time in the living room as we waited for the doctor to call from the hospital, once again, to get verbal permission for the upcoming surgery.  I have been passive so far with all that they are doing.  Medicine is changing constantly and dramatically.  It is much different from nearly 12 years ago when Kayla got her first heart transplant.


I no longer was passive.  I agreed with all they were requesting to do but I no longer wanted delays.  My alarm went up when the fellow said, "Monday for the surgery.  It's an Add-on.  So maybe it will be done on Tuesday."

"Wait a minute!  First you were supposed to close up her chest on Thursday.  Then Friday.  Then I was told nothing would be done until Monday.  So a whole weekend goes by with no closure...and now you say maybe Tuesday.  The lung problem is here because we are not going forward.  Everything that Columbia has done is fantastic.  I have absolutely no complaints.  This is my one and only concern."


He was great, saying, "I understand your concern.  I will bring it up to the team tomorrow morning when they have their discussions."

Great!

I grabbed my overnight stuff, giving Jeff and Mike my goodbyes....

I was on my way to pick up Deirdre.


Then the best ever happened.  Kayla was responsive to us.  She was up a tiny, tiny bit from the sedation.  She could open her eyes a little bit, maybe a half inch.  She could move her head to the side a wee bit.  The nurse said it was not concerning.  She even yawned!


We did not realize that Kayla could understand us and I was showing Deirdre some of the gifts that people were beginning to send.  One was this great flower puppet thing that you could turn on and it sang, "You Are My Sunshine."  Rui and Carlos had given it to her a few days before.  I had it up on the window sill.


We were surprised at how loud it was...too loud.


Deirdre believes it woke her up.

What would have been a short visit turned into a long one because it was impossible to leave her.  We began to tell her everything that was going on and she was listening and reacting!


We cuddled her hands and I gave her a foot massage after requesting that she blink for me twice.  She purposefully blinked once instantly after I asked but the second blink was too hard.


Deirdre admonished me to do the damn foot rub.


I knew Dee needed to get home to bed in Tarrytown for work the next day but she didn't want to leave.  I could just quietly leave but Deirdre wanted to put her to sleep like a baby and then leave.  I know "the Kayla" - you don't put the night owl to sleep.  She stays awake until 4-5-6 in the morning!  


When I said, "Let's go!"  Kayla turned to Deirdre in protest and made a gargling sound from her throat.  She was clearly angry at me!


Dear me!


Yeah baby - my pissed off daughter is coming back to me!